Week 143

Two years ago today we lost Baby Campbell #3.  A lot has happened since then and as difficult of an experience as it was, without it Jack wouldn't be in our lives.  We were too busy today to dwell and be sad, and it is embarrassing to say that I only paused for a moment to look at the ultrasound and remember.

This week Ryan began to take cod liver oil again, as encouraged by our visit to Dr. Cowan.  We are pleased with the ease Phil was able to administer this to Ryan.  Ryan remembered taking it a year ago, and as unpleasant as it is to drink, he is taking it well and the process is over within a minute.  I think back to when we first needed to give this to Ryan and how long it took, and how many shirts he ruined because the oil dribbling out of his mouth stained them.

We attended a birthday party over the weekend and I want to share a sweet story regarding Ryan, a two year old girl, and the pinata.  Numerous times Ryan has been the one at the party that struggles gathering candy and prizes from the pinata.  There are usually bigger and faster kids who push their way to the center and hog the candy.  Ryan often ends up feeling defeated, walking away with a couple of things, crying.  This party was different.  A majority of the kids were very young so Ryan had no trouble gathering loot.  But there were a lot of kids and just behind Ryan was a two year old girl crying because she felt defeated.  Ryan turned to her and took all of the candy that he had gathered in his fist and handed it to her.  She looked at him and continued to cry, not taking the candy from his hands.  So he placed it down in front of her feet so that she could pick it up herself.  I couldn't have been more proud of him!

Ryan with his balloon sword.

Julia after her visit to the face painting station!

 There are times when Ryan refuses to do homework.  It takes a lot to get him to sit down and do more writing, after a long day at school.  This week he surprised us by doing an hour worth of homework.  He read the book, "Are You My Mother?".  After reading a few pages I looked at how many pages there were and asked him if he wanted me to finish it for him.  But he said no.  He wanted to read the whole thing.  It took him 30 minutes but he did it.  I was worried about it taking that long because he then had to write a book report but he did that as well.  He seems to enjoy reading when he knows the words, or when there are only a couple of words he needs help with.  We were so proud of him.

Happy Jack enjoying a day at home with mommy.

I tried out a new pancake mix and was pleased with how fluffy they turned out. However, like the others, after being refrigerated they tend to get crumbly.  But Ryan doesn't seem to mind, as long as they have his mini chocolate chips in them!

I mixed Ryan's chocolate flavored almond milk in to some of the batter to make chocolate chocolate chip pancakes and they were yummy.  I enjoyed them, as well as Julia, who can immediately taste the difference when I try to sneak something GF into her diet.

I read a book this week called Love Anthony by Lisa Genova.  I've had it since September and finally took the time to read it, and am so glad I did.  A big thank you to my friend Bridget who works in the book selling business.  She knows me well enough to know I would like it, and generously surprised me with it when she came for a visit to meet Jack.  I think part of me had put off reading it because I knew it would be sad, and it was.  Not sad because the boy dies, but sad because of the reality of how many children are on the Autism Spectrum, and are misunderstood.  But it was more inspiring than sad.  It reminded me of how far Ryan has come over the past couple of years, blessed that he is verbal, and thankful that he is who he is.  Also, it makes me want to visit Nantucket one day!

Here is the summary written on the back cover:

Olivia Donatelli's dream of a "normal" life shattered where her son, Anthony, was diagnosed with autism at age three.  Understanding the world from his perspective felt bewildering, nearly impossible.  He didn't speak.  He hated to be touched.  He almost never made eye contact.  And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died.  Now she's alone in a cottage on Nantucket, separated from her husband, desperate to understand the meaning of her sons' short life, when a chance encounter with another woman facing irreparable loss brings Anthony alive again for Olivia in a most unexpected way.  In a piercing story about motherhood, autism, and love, Lisa Genova offers us two unforgettable women on the verge of change who discover the small but exuberant voice that helps them both find the answers they need.

This story is so much more than simply autism, and even marriage, and I recommend it to everyone.  You don't need to have a child with autism or be married to connect with this book.  It is about communication, and we all communicate in some way.  I don't want to say much more since I feel the back cover already gives so many "spoilers".  Who wants to borrow it first???

DC

Week 130

We had a good week with Ryan.  He seems to be settling in with the bus and we have received nothing but good reports from school.  He had a spelling test this week and he spelled 9 out of 10 words correctly.  For one of the words he wrote a q instead of a p.  We are still seeing some fairly wild behavior at home but it appears that he is keeping it all in at school and letting us have it at night!

Homework is something that we are doing but it is still a struggle.  He gets frustrated quickly and wants to throw the pencil down and leave the kitchen table.  He eventually completes the work but he wastes more time complaining about doing the assignment than it takes to complete the assignment.  Writing is still something that he tries to avoid but we are working on it both here and at school.   It is getting better but it is something that we have to carefully plan and make sure he does when he is in a good mood.  We are getting better.  We were watching Julia's soccer practice and waiting for Ryan's to begin and he got a big kick out of doing his homework on a clip board outside.  Not sure if that will work again, but it worked on a busy night.

We had another crazy Saturday morning with Religion ending at 10:30 and soccer beginning at the same time.  We thought that Ryan would have a difficult time coming to soccer late but he has taken it in stride.  He is perfectly fine coming in late to the game and it is not effecting him at Religion.  He is even taking to the Religion classes extremely well.  We thought that we would have to convince/drag him to class every Saturday morning but he is excited to go.  We were also worried that he would not be able to make it for the 90 minutes.  We keep getting good reports from the two volunteer parents that are teaching the class.  And on the soccer front now Ryan only wants to play on the field that I am coaching on.  If you recall last year, he did not want to play on the field that I was coaching on and it took a great deal of convincing to get him on my field.  This past weekend the other coach and I decided that we are going to switch fields at half time to work with all of our players.  Ryan did not want to switch to the other coach and insisted that he stay with me.  Luckily another player also did not want to switch and insisted that he stay with the other coach.  It made it easy but it also reminds me that for even simple changes of schedule I still have to prep Ryan.

Ryan has made such progress from when we started this blog that I sometimes forget how difficult it was in the beginning.  We have been very lucky with Ryan and all of the progress that has made over the past few years.  The forgetting to prep him for the coaching change was one thing and another was at a Birthday party this weekend.  We have been letting Ryan cheat when he goes to birthday parties.  When it came time for cupcakes one of the young girls handed Ryan a plain cupcake!  The other cupcakes were all decorated and he was upset because the girls were asking the other party guests which one they wanted and Ryan did not get a choice.  He got upset and ran out of the room.  Dawn had to go get him, calm him down, and ask him why he was upset.  Luckily he was able to tell Dawn why he was upset and was able to return to the room and get another cupcake.

Below are some pictures of this week's events.

Ryan at a birthday party applying what he has been learning at gymnastics.

 

Ryan takes a liking to all little kids and it is great to see him interact with them and share his gentle side.

 

Ryan and Julia added their decorative talents to our anniversary cake.
10/10/12...8 years!

 

PC

Week 101

Some reminders about upcoming events: April is Autism Awareness month.  And April 2nd is World Autism Awareness Day.  In honor of this event, many buildings around the globe will light their buildings up blue on the evening of April 1st.  We'll certainly be lighting up our house blue!  Don't forget to do the same (they actually sell "Autism Speaks" blue light bulbs!) and on Monday, April 2nd, wear blue!  Also, we will again be participating in this year's Autism Speaks walk in White Plains on Sunday, June 3rd.  We're in the process of setting up our page to sign up to join our team or make a donation.  More information to follow about that.  But in the meantime, if you are interested in walking, please let me know so that I can keep you updated.  And we are also in the process of ordering additional Ryan Express shirts since last year's supply is just about depleted.  So if you would like to order one, please let us know. 

Happy Anniversary (a week early) Nonna and Papa!

 With all of this recent warm weather, Ryan and Julia have been enjoying themselves outside whether playing with each other, or with friends.  Unfortunately one evening we found a tick embedded in Ryan's scalp and he was extremely upset as Phil removed it.  He said he wasn't going to go outside anymore but thankfully that wasn't the case the rest of the week.

We went for our check up with the specialist and we will have to return in 4 weeks again.  Although the spots on the baby's heart increase the risk of a down syndrome baby, overall the risk was still on the low side and we didn't feel it was necessary to accept their offer to perform an amnio.  The doctor also discovered some bright spots on the bowels that they will continue to monitor.  Here is an updated ultrasound photo:

One of Ryan's homework assignments this week was to write two sentences, then draw a picture related to those sentences.  He fought me a bit to do the assignment but once he did, Ryan did a great job.

His sentences say: I was in bed.  I was dreaming about my tooth.

Ryan drew himself in bed, with a thought cloud above his head.  He is dreaming about the tooth fairy (in pink) handing him many different denominations of money.  Underneath himself and the money (it is difficult to read in the picture) he wrote "momy love".  I asked him what that said and he said, "mommy loves me".

He can be so creative and it is so amazing to sit there and watch him write and draw.  Once he gets into concentration mode he stays focused on the task at hand.  I am so proud of him!

DC

Week 77

So it is Sunday evening and we're in Pittsburgh.  We had an extremely busy weekend and the last thing I wanted to do was sit here and type this blog.  In fact, I just finished telling Phil that we really need to stop writing the blog because most weeks it tends to send a lot of stress my way... worrying if I have taken enough videos and pictures and straining to remember what actually happened that we want to share with everyone.  At 9pm I begrudgingly sat down to download pictures off of my camera and write week 77's entry.  Editing the pictures took about 15 minutes, and stalling to actually do the writing I checked my email.  And wouldn't you know I received an email from a former student and she mentions how she still reads the blog and is happy to hear about how Ryan is doing.  Gosh, what timing for that email to come when just an hour ago I wanted to give this up altogether.  I guess we can't do that just yet (but be prepared because it will happen in the foreseeable future!)  But not tonight, so here it goes...

Let's start with Pittsburgh since I already mentioned we are here.  We visited Phil's sister and her family for the weekend.  We feel very lucky that the kids are for the most part patient in the car since it is an 8-hour trip to get here.  We've had a busy couple of days.  Here are some of the pictures highlighting our visit. 

The kids playing together.

Shucking corn with Uncle Chris

Ryan, Kate, Julia, and Megan... they love spending time together!



Ryan with Aunt Anne, his godmother.



At the park.

Even before our trip to Pittsburgh, this week was a busy one.  Ryan has been getting more homework and it can sometimes be a struggle getting him to sit long enough to do it.  It sometimes takes a lot of bribing.  And on top of the homework, when he doesn't cooperate and finish his work in school, that gets sent home as well for him to finish as homework.  One of his assignments this week was on the "fun" side.  It wasn't writing letters so Ryan was a little more cooperative.  We needed to decorate a pumpkin to put up on their classroom's pumpkin patch bulletin board.  So out came the box of craft materials and I was able to get Ryan to work on his pumpkin for about 15 minutes.  He was very independent and wanted to do all of the cutting and coloring himself.  He was patient and he did a good job.  I was impressed!  But I could also understand why he may not finish activities at school.  If he doesn't stay completely on task he won't finish because he is on the slow side cutting, writing, coloring, etc.  I'm sure with time the speed will come but for now he's trying his best to be neat and accurate, and he's come along way in the past month. 

And there were more crafts to be completed when our neighbor Carol brought the kids a bucket full of Halloween gifts.  Here Ryan is making a haunted house.  He looked at the picture on the cover of the package and carefully replicated it.  Again, he was a very independent worker and he sat for about 15 minutes to complete this task. 



My friend, Bridget (one of our avid blog readers!) alerted us about the Theatre Development Fund piloting the "Autism Theatre Initiative", the first ever autism-friendly performance in Broadway history.  That evening we heard all about it on a Nightly News segment.  My explanation would not do it justice, so I'm just going to give you the link to the segment:  Autism Theatre Initiative


Recently I received a link from my mom and friend Marni, two more of our avid blog readers, about a heartwarming story of a set of parents preparing their adult autistic son to be out in the world on his own.  Here's that link: Seeking a Place in the Adult World

Well, that is all for now.  And don't worry, when we are ready to end our journey of blog writing we will give advanced warning!

DC